The daunting journey ahead that is rehab

So here’s the thing

I like results quickly. In everything. I like baking, but not bread really because you have to wait. I like hobbies; jewellery making, scrapbooking, things where you see the results straight away. I have friends that do quilting, knitting, learn an instrument etc but it takes such a long time to see results. I’m not a good finisher. I get bored easily and I know I’m impatient.

So here I am at the biggest challenge of my life. We’re not even talking a quilt or a tapestry here. I’m meaning walking and talking. We’re at the starting line of the biggest mountain we’ve ever climbed. And I have to admit I’m scared. Scared on the one hand about whether she will regain her speech and her mobility, concerned on the other hand that I won’t make the cut.  This time, I can’t afford this time to stop the music practice. This one can’t stop, literally, her life depends on it. What if I don’t make the grade? In those moments as a mum that you pray for patience, this DEFINITELY WAS NOT what I had in mind! Immi is going to need patience, care, motivation and I’ve got to provide it. I’m really not sure I have it in me. There’s a nervousness in my gut. An Olympic athlete trains and wants to win that gold, but if they don’t win, what actually happens? What’s the worst that would occur? They wouldn’t take that medal home, they would miss out on some sponsorship and they may owe some money, but if we don’t win at this challenge my daughter is not going to walk or talk again.

I’m human, I’m not perfect. In the cold hard light of day I see my failures and weaknesses. I know my character flaws and maybe that’s why this next journey feels like Everest. I haven’t even run a 5K and I feel like I’m being asked to run an iron man. But this is where I cling hold of a higher power. There are three verses from the Bible which come to my mind.  The first is this:

This verse was written by a guy who had been through a whole lot of life and at the time was writing from a prison in Rome. He’d been shipwrecked, gone hungry, flogged, but he said that he could manage in all circumstances and even find joy in them. I like how this image highlights the word ALL. Ours are unusual circumstances, but we can gain the strength to go through this, however long it takes. We can keep going, through the strength God give us. It's also personal, he strengthens ME, not the chap down the hall, not the person at the end of the phone, not the physio giving instruction, but the ones at the rockface, the ones going through it. You know those people who stand and give out drinks during a marathon, a bit like that, but I reckon, more like someone who runs alongside you and gives you a drink whenever you need it.  Does He give a piggyback? No, we have to do the work but He is there to strengthen at every moment we need it. 

The next verse was written by the same chap. He had a problem, we don’t know what, he called it a 'thorn in his side', but it wasn’t going away and he felt like giving up.  But then he felt that God spoke to him these words:

I’m holding onto this, because it’s when I’m at the end of myself that I’m given some extra resources from somewhere unexplainable.  I feel pretty daunted by this huge rehab mountain ahead, but as I work out of my weakness and lack of knowledge, we will see change. 

And the third verse is this:

(no, that's not me!! 😄)

This verse has become more and more important to me over the years.  It's a truth that has been around for centuries and science is finally catching up!  This verse was written thousands of years ago and is found in a book called Nehemiah in the Old Testament. The Israelites were heading home and had just been reminded of the law they needed to hold to. It seemed huge, impossible to hold to, but they were told ‘Do not grieve, for the joy of the Lord is your strength.’ 

In recent years, scientists have realised that joy, and laughter cause us to release the hormone Dopamine (plus others) in our bodies that these hormones ready us.  They ready us for work, for concentration, for challenge. Educators realise now that pupils learn best when they are happy, relaxed and connected relationally to their teacher. God knew this waaaaay before. So when we sing and worship it does something in us, releases Dopamine (through joy) and Oxytocin (through connection) and makes us ready for the challenge ahead. Having joy really does bring strength to succeed, it’s not just a quaint phrase. I’m holding onto that! It maybe the only thing that will get me through this!

So am I concerned about the formidable mountain that lies ahead? YES.

Am I concerned that I'm not everything and  I don't have everything my daughter needs? YES.

But do I have resources to draw on? YES. The physios, OTs, SALTs will provide the plan and some of the physical help, but spiritually and emotionally those resources will come from beyond me.  I don't dig deep within me, truly, there's not much there.  If I want infinite resources, I need to dig elsewhere, outside humanity.  I'll dig deep in God. 

Newborns

 

It’s 7.30am, it’s not been a good night.  A mixture of babies on the ward, loud talkers, fireworks until the early hours and nightmares.  I have to admit to fighting fear.  Immi’s eyes are well over to the left and she hasn’t spoken yet.  Everyone says it’s early days and it got me to thinking about being born.  In many ways there are similarities; her brain is having to learn to work in a completely new way.  Just as a baby doesn’t develop over night, but takes weeks to form, grow and develop, her brain and body is having to do the same.  And just as new parents don’t have any idea what they are doing and are full of trepidation mixed with a bit of fear and excitement I sit here fretting over her new behaviours and desperate to see improvement and development.

It’s similar in the spirit realm too.  Jesus said that just like when we are born physically as babies, we need to be born again spiritually.  When we make a decision to follow Jesus it’s a new start.  We often know nothing.  The three basic needs of all babies are to know they are loved, to know they are safe and to know they will have their needs met.  It is the same for us now and the same for when we start a new life with God.  He wants us know we are safe in him, we are loved by him and we will have our needs met by him.

I’m concentrating on these now.  Sat here, we have all we need in this moment, we are in the safest and most specialised place right now. We are having our needs met, by hospital staff and by many of you who will read this blog. And we are loved, by God, but also evidenced by the many many messages of support we are being send.

So as I sit watching the monitor I’m holding onto all of these and to the fact that like when she was a baby my job is to keep her safe, to love her and enable her needs to be met. Then I can just watch her develop in her time.

Op news - How do I feel?

So the call came. The call we had been waiting for but hadn’t expected. Especially not today. Today, Boris was announcing more Covid controls not less. Today the R value is increasing not lowering. So we weren’t expecting the call today. My brain stopped working, my neocortex couldn’t work for the day and my limbic system took charge - I was somewhere between fight and freeze I think, but unable to make decisions.

'How do you feel?' I was asked. Or 'you must be please,' or excited, was offered. I knew I didn’t feel either excited or pleased. All I felt was scared. Petrified. This is not a normal op. This is not a run of the mill operation.

Hemispherotomy: A hemispherotomy is an operation that disconnects the cerebral hemisphere - one half of the brain - from the other without removing it.

There will be deficits, visual, cognitive and motor. We are making a swap. She will lose some eyesight on the right hand side of both eyes she can lose up to half, she will be partially blind. Her hand will go from dystonic with no control, to spastic still with no control. Speech and cognition remain to be seen - they can't say at this point- and she will need to learn to walk again. There will be months, possibly years, of physio and rehab which I admit I am fearful of as she’s not the most motivated at the best of times. I’m not sure what I will use as a reward, to bribe her to work hard at it. I’m fearful she will just give up if it’s hard work.

These deficits will happen whether the op works or not. They are hoping the op will lower or stop seizures but they give percentage approximations not known quantities. This is scary. I want to not do it. No mother wants to put their child through this. I want to stay in the known....Until I see her suffering in the known.  The daily seizures the days of prolonged sleep which curtail her life. The daily incontinence and her feelings post-seizure where she laments at being wet and feeling awful. The fear she has of going to sleep because she knows she is going to seize at some point. When I consider the known I want different for her. And this is the only door offered that could bring change.

It feels like a nightmare I wish I could wake from and suddenly find my daughter is able bodied, happy and fully cognitive with a raft of GCSEs awarded to her for her bright future. But it’s not a dream. We have to go through this. We have to make this gut wrenching decision. I want to feel blessed that we have this option. But right now I feel more like: damned if we do, damned if we don’t. I know this comes from a place of fear and I don’t want to give into fear. I want to make the right decision with her and for her.  

To be honest it feels like there is little choice.  We have prayed for years, we have tried many drugs and combinations of, we have tried the ketogenic diet under the dietician.  The national team are telling us this is their recommendation and there is no other direction.  I just wish we didn't have to face it.  If you are a praying person, we value prayer for resilience over this time before hand as the option to pull out is there! And also during, as only one parent is allowed in the hospital with her which is going to be tough. And of course, for this op to be a success. 

The date we have been given for admission is the beginning of November. and I will aim to keep you updated on Immi's journey as time goes on. 

Results Day

I knew this day would come. The day the rest of her cohort pick up GCSE results but we get nothing. It stings and I need to grieve a while today.

I knew a few years ago that she wouldn’t manage GCSEs and I knew last year for sure that she wouldn’t be doing any, but today still smarts a little. There will be no celebration, no excitement about the next step. No sense of achievement in this way. I need to allow these emotions of sadness and grief to surface, just for a while, to acknowledge them, to reach a place of acceptance (yet) again. This is not the life I would have chosen for her. No one wants to have a child with special needs. Yes, we make the best of it, we put a positive face on, we choose to pull out the positives, see the aspects of life she is making progress in and acknowledge those. But truthfully, deep down, I would give anything for her to be able to grapple with Maths problems and write an essay, to feel a sense of grappling with learning and the sense of achievement exam results bring. Today highlights once again, the differences, the losses, the gap between Immi and her peers. It’s a day that points at what she cannot do, like a bit neon highlighter marking her life. A day that I fight off a sense of failure. I know it is not my fault or anyone’s fault, it is just how life works - life is unfair- but it sucks. Every parent wants the best for their child, wants them to have all the opportunities in the world and today highlights doors that are closed. Thankfully, I think she is blissfully unaware, she moved from Mainstream to specialist provision three years ago and today I am so thankful for that. She is not compared today against a cohort of academic achievers, she feels she has found her tribe. A wonderful bunch of pupils who find joy in many things. But I feel for those that are. That have tried within this strange year, but despite their best efforts results day will deliver little to celebrate.

So today, for a moment I allow myself to grief. To be saddened by the ‘what could have beens’ and to acknowledge the differences. I dig deep to congratulate the ones who have achieved, knowing that for Immi these same accolades won’t ever come.

And then, I will dry my eyes, straighten my crown and go and make breakfast!

Charity choices.

I met some lovely people this evening.  We walked into the room, knowing hardly anyone (actually there was one other couple we knew) and walked out having connected, chatted and made friends easily with a number of people.  What made it so easy?  We all had something in common.  We all had a child with Autism.  

We have not had very much to do with the charities surrounding Imogen's labels.  Not for any prideful, 'we don't need it', issues (its quite clear we do!) But simply because we haven't had the capacity.  If Imogen only had one diagnosis it might have been easier - you would know who to give your allegiance to!  But it is more like playing cards, 'pick one, look at it, put it back in the pack!'  

We have 'dabbled' in charities.  Hemihelp (for children with hemiplegia) gave us some great advice and have a really useful parents forum on their website. So when Imogen was first diagnosed I spent a good six months writing to people on the forum and my Dad also ran a half marathon raising money for them.  

I also spent a bit of time on the Dystonia Society website when she was diagnosed with this strange and unpredictable disease. The actor who played 'Charlie Fairhead' in Casualty was their patron, being a sufferer himself, and we continue to dip into both of these great charity websites. But then the epilepsy rose its head - I knew nothing about epilepsy, but I knew there was an Epilepsy Society as we lived in the village where their headquarters is based. 

So again I read up on their website, but then the wave of the next two diagnoses - ADHD and ASD (don't even start me on dyslexia!) and with them a whole lot more charities.  I found it all, the number of labels, diagnoses, charities and websites, quite overwhelming and backed off from most.  Not because they weren't friendly or helpful, but there was just too much information, I felt like I was constantly playing that game at the fair when you hit the gopher on the head and another pops up.  Just to keep on top of all the medical appointments was a feat, let alone try to make contact with charities, and which would I pick anyway?!

When we moved up to Derby I was put in touch with 'Umbrella' which is a charity in Derby for families with Special Needs children of varying diagnoses. That was helpful and we became members. The group met once a month (and still do on the first Wed morning each month) at our church, but I still kept my distance.  I didn't intend to keep my distance and I wasn't sure why I was.  I only recently realised its because  I just don't have the capacity.  Now that sounds a bit crazy when it is a charity that in its nature is supportive and caring (as most are), but actually to be involved in any charity takes time. Time to fund raise, to listen to other parents, to go to meetings.  And I just didn't have any margins to do that, I guess fear of being sucked into something that I couldn't cope with kept me away.

This evening I think may have been a turning point.  We went to a meal.  It was a meeting of the NAS (National Autistic Society) Derby Branch.  It was great, there was a natural connection.  People who understood.  People who had been through similar experiences and had either walked a similar path or were walking it now.  I met some people who I have a feeling are going to become good friends.  And I realised that for the first time in years, I must have found some capacity!

(I do want to say at the end of this blog that ALL the charities that I have had any dealings with have been supportive, helpful, friendly and ready to help.  It is simply our journey that has stopped us getting more involved in any one charity.   If you or someone you support is struggling and needs support in a certain area - please do contact the relevant charity.)

Autism Awareness....extra thought needed!

Well, It is the 2nd of April.  That means it is Autism Awareness day!
Have you seen the blue buildings lit up around the world?  The Sydney Opera House and Empire State Building are among those lighting up blue this year to help raise awareness and understanding of Autism.

Sydney Opera House Lit up Blue for Autism Awareness

So it seems fitting that I mention something that happened recently that was made an 'interesting' experience by Immi's Autism.

We have some Canadian friends, and the other day they were reminiscing about how much they were missing Ice hockey (just hockey to them, they don't mention the ice apparently).  We had been meaning to take our son for over a year as he had wanted to go to watch our local team the Nottingham Panthers.  So this seemed like the perfect opportunity.  So I merrily got online and booked us all tickets to go to the semi-finals.  I did have a moment of doubt just before I clicked 'buy' - 'Is Imogen going to cope with this??'  but suddenly it was too late, the button was pressed!

After buying the tickets I started getting a bit worried.  Had I done the wrong thing? Was it going to be too much?  I am in a great facebook group called 'World of Autism - making it a positive one', so I got on there and asked a few members from around the world what it would be like.  The advice was good, many people mentioned the noise and the cold, (with light being another aspect to watch out for).
So Sunday came.  It was Easter Sunday and we had had a full on baptismal (the full dunking malarky) service, Imogen had been bouncing (no ADHD meds at the weekend!) and by the end of the service she had gone very pale.  We got home at 2pm needing to leave again at 3.  Imogen by this time was very strongly stating she was NOT going out again, she was getting in her bunny suit and watching a DVD, and NOTHING was going to move her!
I was starting to get that feeling you get when your goals get blocked, you all know it, it's called anger - or if you want to feel a little better about yourself, frustration!  I could feel it rising in me and although I was trying to stay calm I could see almost £30 going down the drain and yet another family afternoon ruined. I did not give her the option of getting in her bunny suit, but instead briskly put her in warm clothes and bundled her into the car.  I was prepared, I had ear defenders (and ear plugs) I had sun glasses.  I had snacks, I had drink and I had her normal emergency bag with change of clothes etc. My Facebook status read

"

OK I am now beginning to worry about the wisdom of taking Immi to an ice hockey match after a full on amazing service this morning. Ear defenders - check, sunglasses - check, cuddly toy - check, snack and drink - check, sanity - now where did I put that?!"

We arrived smoothly and although busy, she was coping ok.  However I had forgotten her problem with sitting next to strangers, but with a bit of seat juggling we were settled. She didn't want her ear defenders apparently... but then, it started, the noise increased ten fold and suddenly she wasn't coping.  I have never been so thankful for a pair of red ear defenders!  We did have a tearful few minutes in the middle when I wondered if I was going to have to take her home, the seats never have much room, so it was a bit of a squeeze sitting with a 9 year old on my lap, but from then on, things were actually pretty smooth. We were probably in the noisiest area with the Scottish opposition fans right next to us (my poor Scottish husband didn't know where his loyalties lay!) but she did well.  It was a hard day for Imogen, and I don't think I will be taking her to Ice hockey again in the near future (I would go again though!), but she coped through the day, no major meltdowns, no epileptic fits and no falls, apart from when she fell exhausted into bed at the end of the day!

Will the real Imogen please stand up!

There are two different types of Imogen - and they are like chalk and cheese!

I found myself a few minutes ago chatting to a Mum online who was considering using drugs for her son's ADHD.  We have been through this dilemma, a journey that lasted over a year.  The medics were all 'strongly suggesting' that we try her on a drug.  The school were keen for her to manage without, and after doing some research, I was keen to avoid it too.  However after a year and a half of no academic movement, total refusal to try to read, virtually no concentration, no ability to act with any kind of thought to consequence and CONSTANT requests for hugs (no joke, she just couldn't get enough).  We finally came to the conclusion that maybe we should give it a try - just a try mind!

I took home the prescription, and we ummed and ahhed again for so long that I had to go and get another!  
Finally we decided to go for it and what occurred I can only describe as little short of a miracle.  The change was astounding. Over night she no longer needed the weighted blanket, no longer asked for hugs all the time, almost overnight her reading age shot up, due to actually being able to look at a page without the picture, colours, words, noise, traffic outside, hum of a light switch, wind, rain, sun - everything and anything, being a distraction.(Yes she still struggles to read now, but at least is trying and every now and then I catch her trying to read a book or a sign alone - yaaay!) She could finally sit in a group and answer questions without constant movement and shouting out.  I cannot explain the change fully enough.  And these have continued...
However, there have also been downsides - Immi is still Immi while on the drugs, but she is sensible Immi  - for those of you as old as me, it is almost Worzel Gummage like; she has changed her head over.  Sensible Immi is good, but not as fun and not as happy.  Sensible Immi doesn't like eating and sensible Immi has a bit of a grump on after school (as the drugs wear off I guess). And sensible Immi still has Autism and so doesn't really relate to others on the playground well.  Sensible Immi seems to be getting more tired too - is that the drugs or just that we are at the end of term?

Either way, I am looking forward to having fun loving Immi back for a while (during the holidays). Yes, the house will likely be a mess, yes she will break things, she will drive us all mad (especially her brother!)  She will want the same Paolo Nutini song on over and over and over again - (the Quacky song - sorry Paolo, I don't know its real name!) But she will make us laugh, she will live up to her middle name of Joy.  
I asked Immi a few weeks ago whether she liked taking her 'sensible tablet' as we call it, I don't want her to take it if it is making her unhappy and we constantly monitor whether it is still right for her, trialling a few days without it at school every now and then.  Her answer surprised me; she said it was like someone pulled a curtain back so she could see, and she also said that she thought that she was more the real Immi with the tablet.   Which one is the real Immi?  They are both her. Does she prefer sensible Immi just because she fits in the system better and so gets better feedback from others around her - I don't know.  She appears calmer, more in control on the days with the drug, but she certainly seems more joyful (yes, verging on out of control sometimes) on the drug free days.  I do know that although I love her coping better at school and actually making some progress, I miss her smile on the 'sensible' days, and I love the joy, the freedom, the giggles, the carefreeness of the drug-less days.

 

Frustrating, amazing independence.

I know that one of my biggest jobs as a Mum is to help Imogen become more independent.  I also know that watching her get dressed is one of the hardest things to do.

Immi is fiercely independent and determined already (one of the traits that I admire in her and has brought her through a lot already).  And so every school morning I play a balancing act.  I sit in her room with her and coax her out of bed (I have tried chivving her along, dragging the covers off, yelling, threatening - all of these seem to end up taking longer with both of us stressed out, so coaxing it is.)  I put on 'Tiny little me' from the album 'Great Big God' her present favourite, pull up the blind and tell her about the day, throwing in every second sentence 'Ok lets get your pants on now!'

By nine most Mums should be able to just shout up the stairs - 'come on get dressed!'.  We do this at the week ends.  It usually takes well over an hour of many visits to the room, normally finding her in some state of undress sitting at her desk drawing! So on school days, when time is limited, I must take a different tack. I must stay present.

Generally I have to get her started, pull of the pjs and hold the pants out for her to step into, then she takes over.  Trousers aren't too much of a problem - we only have ones with elasticated waist bands - one handed buttoning, especially on trousers, is tricky.

Then comes the top half.  She will not let me help and so I watch, helpless, everything within me wanting to jump up and aide as she wiggles this way and that to get her right arm which she has no control of into the right position to pull her Pj top off.  Finally free, she shakes her vest (she must wear a vest - even in the height of summer, according to her - not me!) and tosses it around in her left hand to get it into the position to put her head through, then, a few more wiggles and she has her vest on.  

Her shirt, on a number of occassions I do not manage to surpress a 'Can I help you?' is an awkward object.  She manouevers it into a position to get her right arm through the sleeve and leans back, managing, with all her might to lift her arm and aim it into the sleeve, rather like watching  someone try to thread a massive thread through a needle, but holding it about 5 cm away from the end so that they have no control over the tip of the thread.  Eventually she manages this and I am allowed to button up her top button - she has not managed to master this one yet.  Then she painstakingly manages the buttons.  It is painful and heartening to watch - she does it better than I could one handed and never gets angry.  Sometimes she gets a head start and then we have a button race, she starts from the second to top button and I start at the bottom.  As long as it is a draw things stay stable! 
By now she is pretty tired and there have been a number of distractions between (she has not taken her ADHD meds at this point, hence I have to stay present to keep her on task.)  This process has normally taken,  about half an hour to 40 mins, and we still have socks, tie, and splints to go!
The tie - if it wasn't so heart wrenching it would be funny.  She can do this alone and so insists on doing it alone.  Her tie is on elastic (Hallelujah!) and so she places it under her chin and then stretches the elastic behind her head and pulls it down round her neck.  Somedays she manages this fine, other days it keeps bouncing back up and hitting her on the nose or forehead.  Comical but frustrating for her.  Eventually the tie is mastered and she lowers her collar.  I have tried to persuade her that she doesn't need her collar lifted in the first place, but no!  That is how it is supposed to be done.  So she lowers it and then I adjust it as she has always lowered it too far, so the seam is showing and about a centimetre of the inside of her shirt.  
She has never managed to master socks, despite buying them many sizes too big, so I get to put them on and help her with her splint.  We are finished!  Phew!

First and Second baby tucked up in bed.

Oh no, wait!  We must make the bed!  never mind that the rest of her room looks like a bomb has gone off! - we must make the bed and put first and second baby in for the day time sleep.  Now, I have tried bypassing this section - oh no!  Woe betide me!  It just comes round and bites me on the bum as she disappears when she should be cleaning her teeth or getting her coat on, or we have a melt down as we are walking out of the door because it isn't done.  Recently, my husband and I have come upstairs at night to find our bed also neatly made with our night clothes under our pillows - fairies?  No an Immi!

Neatly folded pjs!

We allow 1.5 hours before school in the morning and it is always a rush at the end.  As a person who likes to be on time, and with a responsibility to get my son to school on time too, I get extremely frustrated at the amount of times I am shouting at them to grab their things as we walk (no, run) out of the door.  But Immi will not be hurried, she doesn't work to the time schedule of the world.  And actually, if she did I am sure she would spend her life totally overwhelmed and frustrated.  She has learned (or maybe it is innate) to go at her own pace, to be happy with her achievements, to be determined when she needs to be and find joy in the little things like a neatly made bed.  Instead of rushing her, I should be applauding her, she shows more courage and determination every morning that I often show in a year.

Well done Immi girl!

Don't squash the passion...

So I have just returned form Imogen's class assembly. 

Meet RO the robot and BOT the dog...

It was pretty run of the mill.  Kids standing up and speaking, a few musical interludes, photos on the screen of the residential trip, that kind of thing.  Imogen did well.  She had a couple of sentences to read about her robot and robot dog that were made from cereal packets and ice cream tubs (amongst an assortment of other recycled rubbish!)  I was proud of her, she stood up and said her words clearly, albeit much much slower than her counterparts, concentrating on the words that she had to get out, right arm jerking and flailing uncontrollably.  Everyone clapped her at the end, but I came away sad.

Why was I sad? I was sad because they had finally done it;  they had achieved her doing it all in their way.  She had been squashed, a square peg forcibly shoved into a round hole.
 Had they told her she was going to talk about her robot, and then stood her up, given her her robot (and robot dog!) and asked her to tell everyone about it, she would have stood there with pride, face beaming, completely unaware of all the parents and that she 'should' be embarrassed.  Her chin would have been lifted and she would have spoken (probably at length) about the virtues of her wonderful creations! I know she would have done this because she does it all the time, in many situations, anywhere, anytime.  Like the complete rendition of 'I wanna be like you' to King Louis at Disney World and the conversations with the Zoo Keepers at the local Zoo. At church she is all too willing to go out the front to answer questions or join in a song or dance! 
But they didn't want this.  Instead she had to read - that most hated of all activities, the thing she puts off daily, the thing she struggles with.  Her creativity, her joy, her passion and zest for the activity (which she definitely had; she told us many times of the activity and actually made the dog almost single handedly -literally!- at home) were all lost to a monotonous wall of words, not even a straight clean wall, but a crumbling wall, struggling to hold together.
I ask myself, who has the problem here? Is it Immi who actually has the passion about the activity, but it was lost in what she was asked to do?  Or is it the school who can't cope with the uncertainty of what she might come out with, who can't deal with a bit of spontaneity?  
I taught in this very school last year, so I know where the fear comes from; what if she says the wrong thing, what if she has a melt down, we don't want her to make a scene, we don't want her to be different.  BUT SHE IS DIFFERENT!  And we, as a family, have learned, and are learning to embrace her difference.  
So this evening I am getting her to do her talk again for us and we will cheer an clap and tell her how amazing she is that she can create and find joy in her creation...

A bit of the journey to bring you up to date....

As a family we spent a number of years in Central Asia and then ended up in the UK.  I thought it might be useful to share a little of that story to bring you up to date....

We were living in the capital city of Kstan and were leading a drug and alcohol rehab centre.  Every thing was going well, we had friends, we had a good ministry, the family were settled, we were involved in the local expat school and everything was looking good.  I remember walking one day from our house to the local bazaar in the sunshine and although I was was stepping over the odd open drain I remember thanking God for bringing me to that place and for being happy.  Now, if you are a happy go lucky kind of person, then maybe that wouldn't be such a big deal for you, but for me it was.  I have always been quite a deep thinking morose kind of person!  It takes a lot to make me laugh - I don;t know why, I wish I had a lighter spirit, but I just don't.  I have discovered that strong sunshine and warmth seem to help, so maybe that is why that particular day I was in a joyful place.
At this point in time my kids were 4 and 3 respectively, and a real joy.  They were in that chatty, fun phase where everything was an adventure and something to be discovered.  My son was into everything and boxes, cars etc all became something else in his imagination.  My daughter walked and talked at 10 months and at this point was telling stories and singing and dancing with the best of them.  Yes, she was strong willed, but we figured we were both pretty strong willed too.  
I had noticed a couple of small things during the couple of months prior to this day; her speech had become a little less clear, but she was hearing  Russian, Kz, Korean, German etc etc regularly, we figured she was just a bit jumbled up, and also her toileting had gone backwards a little, but thats not uncommon at 3 right?
Anyway, in the few weeks after this thankful day, I started to notice that her right hand wasn't quite right, her index finger wasn't bending properly anymore.  A couple of months after that and it was Christmas 07.  We were headed home for a 6 month homeleave.  It was to be a homeleave that became home stay.....

After we got home we went to the GP and showed him her finger.  He thought it was a plastic surgery issue and referred us, but that weekend we were talking to a friend who was also a doctor.  He very solemnly told us that we must go back to the GP as he thought it was a neurological issue.  That Monday we went back, the GP listened and within 2 weeks we were in a whirlwind of having MRI scans, lumbar punctures and more blood tests than I care to remember.  During the next month her arm seized up completely and was either bent uptight with her fist by her ear or bent out behind her in a very strange position.  She lost all control of her arm completely. 
It was about this time too that we went to her nursery school assembly.  The nursery teacher had mentioned a couple of times to us about her being strong willed and independent, but it was during this assembly that we realised that there was something markedly different between our daughter and her peers.  In the little presentation, on her face there was none of the normal apprehension that was seen on all the other children's faces, there was no fear of answering questions or shouting out answers, there was no understanding of wait your turn.  There was something clearly just not right.  We wondered to begin with whether she had just missed out learning some of the unspoken social cues that we learn naturally as we grow, because she had been in a different culture, but as the tantrums grew worse and longer and longer (45 mins minimum) we knew it just wasn't the norm.

After a few months the hospital established that she had some scarring in the basal ganglia in her brain and concluded that she had had either a stroke or some sort of encephalitus infection.  After we knew this we thoughtt that we were dealing with something that had got as bad as it was going to get and so we planned to return overseas to our home, ministry, friends and most importantly for the children, their dog and cat.  We booked our tickets to return in the summer and 4 days later we had a call from school (she as now in Reception).  Our daughter had had a seizure and had been rushed to hospital.  To be honest I don't really remember the day now, all I can remember is what others have told me.  She had been walking into assembly and carried on walking into another child when the line stopped.  A teacher told her off (thinking she was being silly) and she had gone into a seizure.  I will be forever thankful that her teacher in Reception was a wonderful woman, whose husband was a local pastor.  She put up with a huge amount behaviourally from our daughter that year and never stopped just showing love, her and her husband have become good friends.  

From that day on we started another whole round of testing, and trying different drugs and now 4 years on and numerous drugs later she is on a cocktail of 3 different drugs which still don't quite hold the epilepsy at bay.  

We still battled on, wanting to return to Asia, but eventually, after about a year of living in Limbo land (not a great place to be), we finally decided not to return.  
It was a huge decision, and one I still doubt sometimes.  I still struggle quite often with being back in the UK, but on the other hand when you hear a few months later that the religious affairs officials kept asking other in our company when we were coming to get our visas (after denying a number of others), I wonder whether our days in the country were numbered.  At least this way we have to opportunity to go back and visit, a denied visa would mean no return.
Eventually hospital staff stopped using the term seizures and started referring to 'her epilepsy'.  No one ever actually sat us down and explained what they meant and how seizures are different, or if there are different types of epilepsy - it was all a bit strange.
In the meantime, she was struggling through Reception, in her own world, fiercely independent, but struggling.  Constantly asking for hugs, but also tantruming for hours on end.  The only way to get her to stop was to wait it out til she was too exhausted.  We tried everything...one health professional after asking us to try different things (and witnessing the efforts) actually asked us if we had tried smacking her!  I tell you  - nothing made any difference!  We realise now that she had some major sensory issues but that can wait for another blog!! :-)  Eventually we got a Statement of Educational Needs, and diagnoses of high functioning Autism and ADHD.  It is a strange mix of relief and sadness to be given diagnoses.  One the one hand no one likes a label, but on the other, with a label, suddenly school staff had a better understanding of how to help, or knew what to go and read up about.  

And now, how do I feel about a daughter with ASD?  I love her!  She is quirky, she is different, she is socially vulnerable, she is loving, she is beautiful, she would fight to the death for something she believes.I worry, will she get anything out of school? Will she find love and not just guys that would seek to take advantage? Will she see God in life or will God/faith/eternal life be too abstract for her to grasp?   She sees the world very differently to me and makes connections in her thinking that I wouldn't make, but sometimes they are amazing, she is innovative in her thinking and I do wonder if one day she will amaze the world.  My fear is that our culture and education system will squash her spirit and self belief first.
 I guess my job is to make sure that doesn't happen! K x

Who are you?

Who are you?  Who am I?
I am a woman, a Mum, a wife, a sister, a daughter, a friend.  I am a Christian, a church leader, a teacher.
All of these things define me, but I am more than the sum of these labels and so are all of you.  

One of the things that defines me most is being a Mum of two.I have a son who is now 10, and a daughter who is 9 and has special needs. Specifically she has Dystonic hemipelgia (her right side is weak and her right arm and hand doesn't work at all), epilepsy, high functioning ASD and ADHD.  She finds life tough at times, but is an amazing inspiration too and so I find my mind is full with so much to think through.  

She is the reason for this blog.  Her name is Imogen Joy.  Imogen means 'to be thought of or dreamed of' and before I was pregnant with her (a whole other infertility story) a friend of mine had a dream with me feeding her.  When I had my first born, my son, my friend walked in to the room and said 'No! That's not the one!' and declared there would be another!  There was, just 14 months later!

She is complex and There are so many aspects to her needs, medical  - physio, OT, meds, botox, social interaction; schooling - teachers, TAs and how to relate to them as a parent, her interaction with her brother and her peers, academic progress, how to develop and learn to be independent, how do I know if I am giving my son enough attention as my daughter needs so much?, and oh so many more..... Then I have all the questions of how she fits in to church, and all the faith questions her needs raise in me, and in turn are beginning to rise in her, how do I protect her in an environment where people relate as if they are friends but may have only just met? - very difficult for an Autistic person to understand, how do develop a culture in our church that allows for ASD and ADHD? (which are on the rise and people with these conditions need to be welcome!  Jesus didn't say 'let the children come to me - except those who may not be able to sit still and be quiet!'  No, he was the most counter cultural, accepting of the vulnerable, teacher of the time, and that's what I want my church to be.)

But I want, no, need the opportunity to see past the questions, to see past the ongoing labels, appointments and diagnoses and to celebrate her, her joy, her vest for life.
So if you want to journey with me, to understand more the travails of a family with Special needs within, to encourage you in your own journey, or to celebrate and remember the reason we all have value, then join me!  It may not be pretty at times, in fact it may get downright messy, but come along for the ride!